My gastroenterologist got me through the worst, and I want to put that up front, first and foremost.
Her aggressive plan for treating my worst bout of Crohn’s Disease put me in remission The First Time. That is a feat, and I am so thankful for that. Months of steroids cut the inflammation, and a year and a half of Remicade infusions kept me from flaring (I guess?) enough to heal my guts.
What I didn’t hear from my doctor, was information about my nagging symptoms of fatigue, brain fog, joint and muscle pain, etc etc etc. I wondered why I was having symptoms if I was clinically in remission. I wondered why remission was based on blood tests and inflammation levels and not on the symptoms I was experiencing.
I know now that it takes a Long Ass Time for our bodies to heal from the massive trauma of colitis. I saw that endoscopy, and it didn’t look good. But a year and a half after my treatment, my guts were almost back to where they were before Crohn’s. I didn’t get advice from my doctor about the time it takes to heal, or what to do about symptoms. Just the same refrain, “Let’s increase your Remicade and see what happens.”
As I have discussed before, numerous times, Remicade is NOT an affordable or accessible drug. I am still paying off medical debt, $400 a month, with no end in sight, because of my Remicade infusions. When it came to a breaking point, I went to my doctor.
“I can’t afford the Remicade, we need another treatment. What about diet?”
“I am a medical doctor, and my job is to prescribe medications.”
Well, that’s weird, because I thought the job of medical doctors was to help their patients stop being sick, and at least offer palliative care.
She looked into a couple other biologic treatments, and some of them were vastly more affordable than Remicade. But to get out of the lost-income-medical-debt-spiral, I wasn’t sure that these treatments, which had clinical response rates barely over placebo, would be worth the money, or the side-effects.
And that’s basically where the discussion ended. I cancelled my upcoming GI appointment and I stopped taking Remicade.
People living with IBD and chronic illness need more options than medication.
- We need doctors that understand our illness affects every part of our lives, and provide us with guidance and therapeutic services to support our recovery to our “new normal.”
- We need doctors that can envision a “new normal” that is pretty close to our old normal.
- We need doctors that see us as more than a dumpster for expensive, heavily marketed drugs with terrible side effects.
- We need doctors that understand chronic illness limits our ability to hold full time jobs, and limits our access to health insurance, and will provide us with solutions that are affordable and accessible.
- We need assistance with activities of daily life.
- We need multiple therapeutic options, including mental health, physical therapy, nutrition, personal trainers, and lifestyle advocates that can help us transform our everyday life into one that allows us to thrive.
- We need a robust, single payer healthcare system that supports all of these needs at no cost to us.
No one chooses to get a chronic illness. We don’t opt in. And we shouldn’t have to bankrupt our future because we got sick and want to feel better.